Air Travel

Last week I had my first flight by myself since getting sick, and while in pretty bad shape with regards to OI. I was going from Amsterdam's Schiphol airport to Seatac airport near Seattle. I didn't have a lot of time to prepare, but did do some research before going. But there were still a few things that went wrong, so maybe my problems and what I learned from them can be helpful for someone else too

Preperation
First of all, I got the seats that had the most possible leg room without being business/first class. I had to pay 100 euros extra each way ($125?), but had a seat where I could put my feet up on my carry-on, or even prop them up on the wall in front of me. For Delta/KLM, these seats are at 12C, 12D, 12F, and 12G in the Economy Comfort area. The other Economy Comfort seats don't have enough leg room to get your feet up unless you have a cooperative seatmate. 12G is best for bathroom access and keeping track of whether it's occupied.

On Delta's site for managing my booked trip, I was able to select wheelchair assistance and gluten-free meals. Basically airports handle all assistance in getting you to the airplane. You tell the airline that you need the assistance with a bit of specificity (can walk short distances, etc), and they tell the relevant airports. Then the airports schedule things.

From Parking to Gate
At Schiphol they say they have wheelchairs at the parking areas. But you have to go into the airport and travel a bit to get to them You need a 2 euro coin to uncouple one, which gets spat back out when you hook it up again when you're done using it, just like shopping carts in Europe. I ended up walking all the way from parking, which was mistake number 1.

At the KLM/Delta check-in/baggage desk they noticed from my booking info that I needed assistance, and they pointed me to the counter where the airport coordinates that. We wandered over, then waited an hour - they were badly understaffed, hopefully not a chronic situation. I then had to walk through passport control, though in an empty line specifically for people needing assistance, and me and another passenger on the same flight got onto a cart and were driven to our gate, which was a VERY long way away.

From Gate to Plane
When I got off the cart, I went through security, which is handled at individual gates for flights going to the USA. An airport guy made me wait a few minutes while standing there, even though he saw me get off the cart, then asked the usual questions. When he finished, he pointed me to the line for body scans and carry-on x-rays, and I told him I can't stand in line that long. He looked at me like I was crazy and said "Well there is only the one line." So I stood in line, while the other guy that had ridden on the same cart was escorted to the front of it. When I was on the verge of melting down, I told a Delta/KLM guy that I was supposed to be getting assistance and that I really couldn't keep standing like this. He took me to the front of the line then and I got through quickly.

Then I was in the waiting area, which was packed because it was only 5 minutes before pre-boarding. Nowhere to sit near the gate, so I sat at the back and tried to recover physically and mentally. When pre-boarding for people needing assistance was called, I tried to walk to the gate but there were a bunch of people standing around, so had to wait for them to move. There was no wheelchair at the gate, so I had to walk to the airplane. Then a couple people were blocking the path onto the airplane while they tried to wheedle better seats out of the flight attendants. By then I was ready to collapse again so I called out "I really need to sit down and I can't keep standing here!" and they moved along.

Bathroom Nazis
I was really wrecked the first 2-3 hours of the flight, though I got my carry-on down and propped my feet up on it as soon as possible. After about an hour I needed to pee, and there was a bathroom less than 10 feet in front of me. It was a first class bathroom, however, and I was in the economy cabin. A flight attendant saw me staggering toward it and snapped at me to use the ones toward the back. I said "I can't walk that far", and she didn't respond, so I sat down and tried to think clearly and not burst into tears while getting up the strength for a 2nd try. The guy next to me was nice, and told me to explain it to her. I went for a 2nd try, but she was walking the other way and I made it in without being detected Eventually they saw me using it, but I was messed up badly enough (could barely walk) that it was fairly obvious I needed to use it. Then another flight attendant saw me going for it near the end of the flight, and called me on it. I was doing a lot better by then (many hours sitting with my feet up), so I was able to give a coherent response: "I can't walk that far. I'm disabled. I'm sorry, but I can't walk that far." And then he was quite nice and said "Oh, that's okay, just checking", etc.

Assistance at Seatac (Seattle)
Getting off the plane was easy. I'd read online that people getting assistance should wait til everyone else is off. Even though I was near the front and could have hobbled off pretty quickly, there was a wheelchair waiting for me right outside the plane (with my name on it!), and it's a lot easier for the wheelchair pushers if they can avoid the crowd. So I sat and waited, and a flight attendant saw me waiting and asked if I had a wheelchair outside, and I said I was supposed to, so he went out to check and said it was there. So I got off after everyone else, and got onto the wheelchair, and the pusher put my carry-on underneath it. She then pushed me to the gate, the passport control, the transport train, and baggage. After my bag arrived she took me to a bench outside so I could sit on that to wait for my ride.

What I learned:

Sit in the car until your wheelchair arrives, either brought by your friend/family member or airport personnel (arrangements have to be made directly with the airport in advance).

Insist upon wheelchair assistance for anything that requires standing more than a minute (or however long you can repeatedly stand). The airport is required to accommodate that.

Preface any demands with "I am disabled." If you only say "I can't stand in line", they might just think you think you're a special snowflake that wants unnecessary privileges. It's hard to think of how to convey these things properly when in bad shape, so rehearse saying "I am disabled. I need X" and "I am disabled. I can't do Y". It needs to be automatic, which is hard when alone and oxygen-deprived and unused to thinking of yourself as disabled and needing assistance.

Talk to the flight attendants as soon as you get on the airplane, and explain that you need to use the closest bathroom, even if your ticket does not entitle you to use it. It's a reasonable accommodation, so they don't really have a choice in the matter.

It's really worth the 100 extra euros for leg room to get your feet up. If no such seat is available when you book your flight, contact the airline and explain that you need it - they're used to kicking people out of those seats for passengers with medical needs.

I've found that using a wheelchair instead of the motorized cart works better. They leave you at the gate with the wheelchair, so you can keep sitting, and put you in a special pre-boarding area. They also they push you through security in the wheel chair, the attendant lifts your carry on luggage (takes out your computer etc.) and you only have to stand while they pat you down.

United also upgraded me to the economy "comfort" section (because of the wheelchair) though not to a row with more legroom.

I also take an empty steel water bottle through security and onto the place so that I can fill it up whenever I need to.

I've never flown out of Amsterdam since needing assistance, but I have flown in and out of Brussels.

I've found that using a wheelchair instead of the motorized cart works better. They leave you at the gate with the wheelchair, so you can keep sitting, and put you in a special pre-boarding area. They also they push you through security in the wheel chair, the attendant lifts your carry on luggage (takes out your computer etc.) and you only have to stand while they pat you down.

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I think they were supposed to keep me in a wheelchair, but opted not to due to being understaffed. I also think that's why they kept me waiting an hour - they knew another guy would be on the same flight and wanted to get us both out there at the same time.

Delta sent me a questionnaire about the airport disability service a day or two after the flight, and any wait above 30 minutes was grouped together with "never" getting the required assistance, so it sounds like waiting for an hour is considered very inappropriate. They also had a box for leaving details about the experience, which I did. I received a personal email after that, apologizing for the problems and promising to contact the airport about it.

I also take an empty steel water bottle through security and onto the place so that I can fill it up whenever I need to.

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Good idea ... then you're not taking liquids on the plane, but you're also not at the mercy of the water dispensers

Good luck on the return!

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Thanks! Though I'll have my fiance with me going back (he's flying out here in mid-November), so that should help a lot. He's good at seeing when I'm having problems, and also excels at making demands in several languages.

sorry to hear that. When I travelled I was given a wheelchair rather quickly... I wasnt left unsuitably standing anywhere at all (thou did get put by them into a different waiting area in the wheelchair and was told to stay there till they came and got me.. but then was forgotten about so then told sorry, we forgot about qll about you and its now too late to board .... after some tears .. it was completely their fault as I'd done exactly what they'd told me too!!.. they actually opened the plane back up and got me on.. but then they tried to kick me off again due to my very visable tremors and spasms, dizziness, weakness..having trouble holding my head up so it was flopping etc (the stress of being told that they'd caused me to miss the plane was too much so I'd started crashing).. so then they were deeming me too sick to fly without a doctors letter (that was even thou when I'd booked my tickets I'd checked to see if I needed a doctors letter and had been told no i didnt)

More tears and my refusal to get off the plane (i was going to make their security team have to drag me off!!! and while all this was happening their plane was being made late, I think I made their plane 20mins late) before they finally decided they'd get me to sign wavers and allow me to fly. It was a nightmare situation. but yeah.. getting wheelchairs..and helped to locations within the airport that I had no trouble with. Make sure you get a wheelchair from the start.

I think you should put in a complaint over that guy who let the other go to the front of the line and who didnt treat you in the same way as the other even thou they'd been told you had issues. He shouldnt be allowed to work with disabled people if he's going to be treating people like that.

I am going to ask a silly question, but are you allowed to take your own wheelchair with you from the beginning ? or does it make things more complicated for the staff to accept you on board (like an excuse for beeing too sick)?
I begin to "explore" travelling abroad to get some treatment (because there is really none in the country I live in), but i am very frightened of crashing even more because of all the "flight induced" stress + fatigue etc.. .and I use a wheelchair for every move outside the house.
One more question - for the EMF sensitive guys - how do you feel on the plane? How do you cope with all the electronic devices ?
Thanks for the thread Valentijn!

I am going to ask a silly question, but are you allowed to take your own wheelchair with you from the beginning ? or does it make things more complicated for the staff to accept you on board (like an excuse for beeing too sick)?

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They can't reject you for that, so long as you can take care of yourself on the plane, use the bathroom, etc, and get off it without help in an emergency. Otherwise you need a companion/care taker with you.

It sounds like most airplanes have a space to specifically stow a foldable wheelchair belonging to a passenger, and a lot of them can even stow a scooter on the plane if you let them know ahead of time and you're the first person asking to do that for the flight. I only looked at Delta, but it was really easy to find their info about bringing your own wheelchair. They even had a few videos.

On a related note, it was pretty easy and cheap to rent a folding wheelchair once I got to Seattle. Only $95 per month, and it folds up nicely and is easy to unfold and use. But I did only find one medical supply store on maps.google.com that rents them out, versus selling them, so I don't know if that's an option at all in smaller cities.

So today I had my return trip from Seattle to Amsterdam, where I applied some of the lessons learned on the first flight.

SEATTLE - SEATAC AIRPORT
I was with my fiance, so things were easier in general. We got dropped off right in front of our check-in counter almost 3 hours before take-off, stood in line a bit, then walked about 10 yards to Delta's assistance counter. Oddly, the biggest sign at the assistance area simply said "BAGS". Still trying to figure that one out

It was about a 15 minute wait for a wheelchair, and we rolled through the fast lane for disabled people and staff at security. They assumed my fiance would be walking with me the whole way, so it was no problem for him to go through security, etc, with me. I stood up to walk through the metal detector, sat down on the put-your-shoes-back-on bench, then got back on the chair when it came through.

Then we got sent to the wrong gate, but spotted the error when rolling by a "departures" screen. So we got a tour of the airport We were then dropped off at the proper gate, and I tipped the pusher about $6, since she'd been nice and chatty and the idiot at the desk had sent her to wrong end of the airport. Then my fiance got me hot chocolate and sushi, which turned out to be a very good thing.

When it was almost time to pre-board, there was no wheelchair for me, but my fiance went up to check. They called in another wheelchair, and I was in it and at the front of the line before pre-boarding even started. There were three other wheelchairs getting on the flight, which seems a bit unusual. I also noticed that the other wheelchairs arrived right before pre-boarding started, so there was no need to drop them off so the pushers could go push other people around for an hour or so.

ON THE PLANE
As I walked into the plane and crossed over to my aisle, I said to the flight attendant "I can't walk far and I'm sitting right here (row 12). Is it okay if I use the bathroom right here (pointing at the first-class bathroom)?" She said she'd check with the pursar (head flight attendant?), then came by a minute later to let me know that would be fine, but that my companion should still use the economy bathroom.

I was still a bit tired out by then, even though I'd not done much standing or walking. I didn't feel light-headed at all during the 9-hour flight due to taking Strattera, so didn't put my feet up on my bag this time. The gluten-free food was a lot nicer looking than the stuff they load up in Amsterdam, but it still all had egg in it, so I couldn't eat any of it - hence being glad I had sushi at the airport

AMSTERDAM - SCHIPOL AIRPORT
The Amsterdam airport still sucked, but not as horribly. Part of the problem was that there were so many disabled people on the flight I think. We waited til the plane was almost all unloaded, then got off. There was a wheelchair right outside the airplane, but it wasn't for me when I asked. She said there were carts at the end of the walkway, but I'd done that before and knew better. I told her I definitely couldn't walk that far, so she loaded me up and pushed me up the walkway to the electric carts, then she went back to get the person she was waiting for.

After about 5 minutes of waiting, she said she would take another group first, since their destination was closer than ours, then come back and drive us around. So we waited another 25 minutes But then she returned, drove us to the elevator, loaded me into the wheelchair, and pushed me through passport control, then to get our luggage, and then to the taxi waiting room.

THOUGHTS
Overall, things went much better and I did a good job of pacing and expressing myself. I should have prefaced my "I can't walk far" on the airplane with "I am disabled and ...", but I came with the other wheelchair people so I suppose it was obvious enough.

I think I might need to fill out the airline/airport assistance forms as "Can't walk at all" instead of "Need wheelchair but can walk short distances", since at Amsterdam they seem to assume that a "short distance" is anything under a kilometer.

I should bring my own snacks next time, since I have so many foods I can't eat. The main entree and salad is usually fine, but I can never eat their gluten-free breads or most of the fruits.

Thanks for the info Valentijn and glad your trip went realtively okay - I'm making my first flight for 6 years in December, I'm trying not to get too anxious about being in a confined space with so many people and their 'smells' for want of a better word, I've ordered some face masks as I suffer from MCS and also have a travelling air purifier, so I should be okay fingers crossed. I'll just stick with taking a container of gluten free toast which should do for the 5 hour flight. Its always good to hear of other people travelling successfully.

More flying experiences, from a trip to visit family for the holidays!

We took a loaned/rented collapsible wheelchair with us, so were able to avoid the horrible handicapped "assistance" at Schiphol Airport in Amsterdam. I was able to push a luggage cart while my fiance pushed me in the wheelchair, so we made a slightly awkward convoy getting to the KLM/Delta Check-in Desk for Complicated Passengers. An employee spotted us struggling, so took the cart and helped us get through the ropes and such, and left us in the long slow line.

So we dumped the luggage, got our boarding passes, and gave the disability assistance area a wide berth. We easily got to our gate, with just my fiance pushing and me carrying my big carry-on on my lap. Then we got pulled to the front of the security line at the gate. They didn't have any clear marking for wheelchairs going in the "Customers Who Pay More" line, but they pulled us out of the normal line when they spotted us. In the future, we'll probably go straight for the special line, or at least cruise past very slowly in hope of getting waved through

I had my 4ME and B12 glass phials in their boxes, together in a clear plastic box, along with the letter from my doctor which detailed my treatment for the next couple months. We told the security scanner people about the liquids as we got in line, and didn't have problems at all.

We were early, so it was pretty simple to get to the disabled seating area near the gate. It can be a lot harder to squeeze our way to the front once the room is full, though it's also important to do that before pre-boarding starts in any event, when the non-pre-boarders feel compelled to start casually creeping toward the gate and blocking the aisle. Though my fiance was at first reluctant to sit on a disabled seat with me parked next to him in my wheelchair, I assured him that he could stand up and lean on something instead if a disabled person needed the seat later The one very bad thing about the Schipol gates is that there's no disabled access to bathrooms once you're past security - they're down a flight of stairs. So it's best to empty the bladder before getting to the gate security.

About 10 minutes before pre-boarding started, they pulled us up to the entrance to the gate, as the only wheelchair passenger. So we were able to get to the airplane pretty quickly when pre-boarding started, without getting stuck behind slower people or families trying to score an upgrade from the flight attendants (as if they have the authority!) My wheelchair was left right at the entrance to the airplane, with the checked tag on it, and my Delta wheelchair form with data about me and the wheelchair attached to it.

On the way to Seattle we were sitting waaaay in the back, as we couldn't reserve the "preferred" Delta seats. I think they have a very limited time frame for doing it, and we didn't know what it was. Walking all the way to the back really is horrible - next time I'll definitely take the time to call them and bitch until I can get an acceptable seat, even if it costs a bit more.

My heart rate was pretty high on the way to Seattle. Mostly 105-110, even with one leg resting on the knee of my other leg, and some time with both feet up on my fiance's seat while he roamed the aisles. The free movies were quite good though, and made the 10 hour flight pass pretty quickly. I'm not surprised that they offer those for free to all passengers now, since they keep us happy and quiet in zombie mode

Handicapped assistance was great in Seattle. We had pushers in Seattle, since that place is a bloody maze where routes and protocols get rearranged every year or two. For example, they no longer have a special short line for wheelchairs, and there's 3-4 different elevators in obscure locations involved depending on which direction we're going. We would literally get lost without that assistance, which could be awkward, as some of the paths go through semi-secure areas.

For the return trip we would've had to get up at 4am or something ridiculous like that to catch a ferry, drive a couple hours, and get to the airport 2-3 hours before take-off. So we went down the afternoon before our return flight and got a room at an excellent hotel half a mile from the airport. There's a ton of airports in the area, so prices were quite cheap. Since we could be picky, my 4 criteria were: handicapped accessible, free internet, free airport shuttle, and room service. That left us with three options on booking.com (out of 15 or so), so I picked the one which wasn't right on the main road, and had lovely grounds with lots of trees. It was the "Cedar Brook Lodge" if anyone's ever looking for a nice place to stay in Seatac.

During check-in for the return flight we were able to move a few seats in front of the bathrooms in the middle of the cabin for 49 euros per seat But being in row 22 versus 42 really made a big difference in how exhausted I was by the time I sat down.

The hard part on the way back to the Netherlands was getting into the airport at Seattle for the return trip with two suitcases, a wheelchair, and just my fiance to manage it all. He learned how to push my wheelchair one-handed pretty quickly And we had to chase down my boarding pass, since the Delta log-in couldn't cope with an American's trip to a foreign country being the actual return trip - it really wanted me to have a "return" date for coming back to the US. It was rather bizarre, since it was my return leg of a round-trip ticket, and they even had a field to enter my country of residence separately from my country of citizenship. But after a useless employee in the Delta disability assistance area failed to be of any help (he seemed to be a pusher who was filling in for the real coordinator for a few minutes) we found another Delta employee who took us over to a counter to get sorted out quickly.

We got rid of our luggage in the process, much to my fiance's relief, and quickly got a pusher and taken to our gate. Security to the terminals wasn't too bad, though the disabled entrance was gone and they had a long line form outside the ropes, then let us all through at once to walk (and roll) past the crack-puppies. They then asked if I could walk through the scanner, to which I frankly replied "I really shouldn't ... I'm already going to be totally exhausted today." So a woman rolled me through, rubbed drug-detection pads over me and the chair, and gently groped me and the chair. A bit slower than walking through, but too often I end up having to stand too long or walk too far if I do get up for that. Better to sit back, relax, and get groped

Our pusher then got us to our gate, and we gave him a tip before he left, which is pretty standard in the US, though not required of course. I wish they'd take up tipping in Europe - maybe they'd try to provide better service in the hope of getting a couple euros. It took us over an hour to get to the gate, even though we didn't have any waiting-around time in the process. So it was good that we arrived somewhat early at the airport.

We made the mistake of finding a quiet corner to sit in at the gate. And then had one helluva time getting out of said corner when it was time to use the bathroom then park near the gate entrance in preparation for pre-boarding. My wheelchair hadn't been tagged yet, so the gate agent tagged it. Then we had to wait at the end of the corridor right outside of the airplane while they tried to adjust it to get rid of the large gap between the corridor and the airplane. Apparently some new security "feature" doesn't allow for adjusting it once the power is turned on in the airplane. So eventually they gave up and just told everyone that there was a big gap and to be careful.

We left the wheelchair behind then, and I shuffled on board, and back to my seat, which wasn't nearly the death march I'd had getting to the very back of the airplane on the previous flight. My heart rate did a lot better during the flight, only getting high during the last couple hours. I did have to stand around too much to wait for the restrooms, which eventually took a toll. They have lights over the bathroom area which turn green if there's an empty toilet, but one of the bathroom locks was faulty, and was never closed all the way. And the other toilet, which was the one I always ended up in, didn't have a working sink, which was especially un-nice since I was in the "bloody massacre" stage of my period. Alcohol wipes just aren't the same as a good wash, and I think I lost a few layers of skin off my hands in the process of using them.

The food in both directions wasn't too bad. I really should've stayed away from the soy/gluten/dairy free chocolate cupcake on the way home though. The 2nd ingredient was eggs, which I have a nasty problem with if there's more than a small amount, and the digestive enzymes don't seem to help with that one

We waited a while before getting off the airplane, basically until the aisle up to the door was clear, and I wouldn't get trampled by people behind me in a hurry to leave. My wheelchair was being rolled up to the airplane right as I was getting off of it, so I immediately had a place to sit, and the employee pushed me down the corridor to the terminal. After that, they offered to get us to our next gate, but we didn't need to get to a gate, and said we could manage it the rest of the way. So she gave us directions on getting out of there, including where the one elevator would be. Okay, maybe their disability assistance is improving - or they're just more helpful when someone has their own chair and looks more disabled as a result

Our luggage arrived quickly, and my fiance got it on a cart, which I pushed again as my fiance pushed me. We were better at taking corners by then, and I was better at holding the bar down to keep the breaks off, so we didn't have much trouble getting to the opposite end of the airport. Then we waited forever for our pre-arranged taxi, and got home quickly after that, around 9am.

The house was 13.5 C (56 degrees), so we got the heat cranked up, and I huddled under my electric blanket while waiting for the house to warm up a bit. Then I had a 4-5 hour nap, woke my fiance up from his nap, and stayed awake until about 10pm. We watched The Interview to stay awake, which was actually pretty witty, despite being crude. Then I took some melatonin to hopefully let my body know it was time to sleep for 8-10 hours in the Netherlands, and it wasn't just nap time back in the US where it was currently 1pm. That seemed to work pretty well.

I got up at 1am and took my doxycycline (it makes me puke if I have my eyes open after taking it), then went back to sleep until about 6:30am. So I got 8 hours of sleep, after a 5 hour nap My fiance doesn't take melatonin, and was up off and on during the night, though he functions pretty well even so. Anyhow, I'm feeling pretty decent today, despite all of the traveling.